Polymyalgia Rheumatica explained: This is a helpful... - PMRGCAuk

PMRGCAuk

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Polymyalgia Rheumatica explained

19 Replies

This is a helpful video

youtube.com/watch?v=QsHIle6...

Bert

19 Replies
SheffieldJane profile image
SheffieldJane

Really great summary BertM thanks for posting.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

It has been posted before, but good for newbies who haven’t seen it previously, although I think we made the comment about length of time PMR lasts …TY

123-go profile image
123-go

Thank you, BertM. A straightforward video described in layman's terms and especially useful for the newly or not so newly diagnosed. I largely agree with many points made but not so with PMR lasting "9 months to 2 years." This view often leads to patients determined to 'get off' Pred reducing too quickly/by too large a dose in having relapse or flare.

The rheumatologist appears to be someone with whom you could have a two-sided conversation 🙂.

Kendrew profile image
Kendrew in reply to123-go

Completely agree....if there's one thing I've learnt, it's that the majority of people diagnosed with PMR will not be clear of the condition within 2yrs. The average length of time is much more likely to be between 5 and 7yrs, but even so....for many people this will be even longer than that, particularly if complications occur.

The rheumatologist in the video did seem more informed than most though and her explanations were clear and easy to understand. A little 'win' perhaps?

123-go profile image
123-go in reply toKendrew

Yes, indeed. It does make me wonder how many people with PMR she has actually come across or treated for that matter. Mind you, I'd take her in the place of some who've been mentioned here 😉.

PMRpro profile image
PMRproAmbassador

Good as far as it goes yes - but still propounding the 2 year myth as Prof Sarah Mackie in the UK calls it!

piglette profile image
piglette in reply toPMRpro

As she says “PMR could be in your life from one to two years”. If only!

PMRpro profile image
PMRproAmbassador in reply topiglette

I wish!

Exflex profile image
Exflex in reply topiglette

At one point I believe she says 9 months to 2 years. Where do they learn this stuff… on YouTube?

PMRpro profile image
PMRproAmbassador in reply toExflex

Worse than that - medical textbooks and other medics ...

Windy183 profile image
Windy183

Thank you for posting that link, I found it most interesting. I’m waiting to see a rheumatologist and have only had telephone consultations with my GP who seems most disinterested in this condition so to listen to that was most helpful.

HamishPMR profile image
HamishPMR

BRILLIANT THANK YOU

HamishPMR profile image
HamishPMR

Although she suggests that PMR would last for up to 2 years which I think is in line with NICE info, but my experience and I think others on Healthunlocked is that it lasts a h@ll of a lot longer.

PMRpro profile image
PMRproAmbassador in reply toHamishPMR

CAN last a lot longer - I do know people who were through in 2 years and it has never come back.

Iamfedup profile image
Iamfedup

one to two years!!!!🤣😂🤣😂

sewingdays profile image
sewingdays

Thanks. Very helpful

Nightingales profile image
Nightingales

Thanks for posting. I think it’s very helpful for someone newly diagnosed.

67Blue profile image
67Blue

Well then you get the smart a.... like the one who supposedly told my husband at an Old Boys Reunion that he had PMR took steroids for a few months and it was gone!!!!! Maybe he was one of the 9 months-2 year group. My husband grasps at any crap like that he can find. I am still praying for 2ish years one can but hope.

PMRpro profile image
PMRproAmbassador in reply to67Blue

Men very often DO do better. But I do remember one lady telling us her husband going around telling people he had PMR, took pred for well under 2 years and had no adverse effects. Sounds good, eh? In fact, he was on pred for nearly 4 years and had a load of side effects she said. And I know who I believe ...

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